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Cited by 47Race, Genetics, and SocietyEthics in Clinical ResearchPharmacogenetics and Drug Metabolism

Risk, Reward, and the Double-Edged Sword: Perspectives on Pharmacogenetic Research and Clinical Testing Among Alaska Native People

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Shaw, Jennifer L., Robinson, Renee, Starks, Helene, Burke, Wylie, Dillard, Denise A.·2013·American Journal of Public Health
DOI 10.2105/ajph.2013.301596PMC PMC3828986
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Abstract

Objectives. Pharmacogenetic research and clinical testing raise important concerns for individuals and communities, especially where past medical research and practice has perpetrated harm and cultivated distrust of health care systems and clinicians. We investigated perceptions of pharmacogenetics among Alaska Native (AN) people. Methods. We held four focus groups for 32 ANs in south central Alaska to elicit views about pharmacogenetics in general and for treatment of cardiovascular disease, breast cancer, depression, and nicotine addiction. We analyzed data for perceived risks and rewards of pharmacogenetics. Results. Potential risks of pharmacogenetics included health care rationing, misuse of information, and stigma to individuals and the AN community. Potential rewards included decreased care costs, improved outcomes, and community development. Participants also discussed 8 contingent conditions that could mitigate risks and increase pharmacogenetic acceptability. Conclusions. Alaska Natives perceive pharmacogenetics as potentially benefitting and harming individuals, communities, and health systems, depending on methods and oversight. Researchers, clinicians, and administrators, especially in community-based clinic and health care systems serving minority populations, must address this “double-edged sword” to effectively conduct pharmacogenetics.

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Cited by

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Authors
Shaw, J. L., Robinson, R., Starks, H., Burke, W., & Dillard, D. A.
Affiliations
Southcentral Foundation (US)
ORCID
Venue
American Journal of Public Health
Publisher
American Public Health Association
Published
2013-12
Volume
103
Issue
12
Pages
2220-2225
ISSN
  • 0090-0036 (ISSN-L)
  • 1541-0048
DOI
10.2105/ajph.2013.301596
PMC
PMC3828986
OpenAlex
W2094630616
Cited by
47
References
0
Citations by year
2026: 1 · 2025: 2 · 2024: 7 · 2023: 1 · 2022: 7 · 2021: 2 · 2020: 5 · 2019: 4 · 2018: 5 · 2017: 2 · 2016: 5 · 2015: 4 · 2014: 2
FWCI
2.43
Type
journal article
Language
en
Open access
Locations
  • American Journal of Public Health (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • RePEc: Research Papers in Economics (submittedVersion)
Funders
  • University of Washington
  • National Institute of General Medical Sciences (U01GM092676)
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmacogenetics and Drug Metabolism
Keywords
pharmacogenetics, pharmacogenetic testing, Alaska Natives, Indigenous health, risk perception, perceived benefits, health care rationing, stigma, community clinics, minority groups, cardiovascular disease, breast cancer, depression, nicotine dependence, research ethics, trust in healthcare
MeSH terms
Adolescent, Adult, Alaska, Inuit, Female, Genetic Testing, Humans, Health Knowledge, Attitudes, Practice, Male, Pharmacogenetics, Reward, Focus Groups, Risk Assessment, Trust, Biomedical Research, Qualitative Research, Young Adult

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